IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and ...depression. However, the prevalence and incidence of anxiety and depression among this population appears to be unknown. OBJECTIVE: To conduct a systematic review and meta-analysis to estimate the prevalence and/or incidence of anxiety and depression in children, adolescents, and young adults with life-limiting conditions. DATA SOURCES: Searches of MEDLINE (PubMed), PsycInfo, and Embase were conducted to identify studies published between January 2000 and January 2018. STUDY SELECTION: Studies were eligible for this review if they provided primary data of anxiety or depression prevalence and/or incidence, included participants aged 5 to 25 years with a life-limiting condition, were conducted in an Organisation for Economic Co-operation and Development country, and were available in English. DATA EXTRACTION AND SYNTHESIS: Random-effects meta-analyses were generated to provide anxiety and depression prevalence estimates. Meta-regression was conducted to analyze associations between study characteristics and each prevalence estimate. MAIN OUTCOMES AND MEASURES: Prevalence of anxiety and depression. RESULTS: A total of 14 866 nonduplicate articles were screened, of which 37 were included in the review. Of these, 19 studies reported anxiety prevalence, and 36 studies reported depression prevalence. The mean (range) age of participants was 15.4 (6-25) years. The meta-analysis of anxiety prevalence (n = 4547 participants) generated a pooled prevalence estimate of 19.1% (95% CI, 14.1%-24.6%). Meta-regression analysis found statistically significant differences in anxiety prevalence by assessment tool; diagnostic interviews were associated with higher anxiety prevalence (28.5% 95% CI, 13.2%-46.8%) than self-reported or parent-reported measures (14.9% 95% CI, 10.9%-19.4%). The depression meta-analysis (n = 5934 participants) found a pooled prevalence estimate of 14.3% (95% CI, 10.5%-18.6%). Meta-regression analysis revealed statistically significant differences in depression prevalence by the mean age of the sample (β = 0.02 95% CI, 0.01-0.03; P = .001). CONCLUSIONS AND RELEVANCE: In this systematic review and meta-analysis, the prevalence of anxiety and depression among children, adolescents, and young adults with life-limiting conditions was high, highlighting the need for increased psychological assessment and monitoring. Further research is required to determine the prevalence and incidence of anxiety and depression in a larger sample of children, adolescents, and young adults with a broader range of life-limiting conditions.
ObjectiveTo determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes.DesignNational cohort, data-linkage ...study.SettingPICUs in England.PatientsChildren admitted to a UK PICU (1 January 2004 and 31 March 2015) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to hospital episodes statistics enabled identification of children with a LLC using an International Classification of Diseases (ICD10) code list.Main outcome measuresRandom-effects logistic regression was undertaken to assess risk of death in PICU. Flexible parametric survival modelling was used to assess survival in the year after discharge.ResultsOverall, 57.6% (n=89 127) of PICU admissions and 72.90% (n=4821) of deaths in PICU were for an individual with a LLC.The crude mortality rate in PICU was 5.4% for those with a LLC and 2.7% of those without a LLC. In the fully adjusted model, children with a LLC were 75% more likely than those without a LLC to die in PICU (OR 1.75 (95% CI 1.64 to 1.87)).Although overall survival to 1 year postdischarge was 96%, children with a LLC were 2.5 times more likely to die in that year than children without a LLC (OR 2.59 (95% CI 2.47 to 2.71)).ConclusionsChildren with a LLC accounted for a large proportion of the PICU population. There is an opportunity to integrate specialist paediatric palliative care services with paediatric critical care to enable choice around place of care for these children and families.
Background:
Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services.
Aim:
To ...estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population.
Design:
Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence.
Setting/participants:
All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18.
Results:
Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)).
The prevalence was highest among the most deprived group and in children of Pakistani origin.
Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030.
Conclusions:
The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.
Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. ...We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A&E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95% CI 0.64–0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95–1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use.
Conclusion
: Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs.
What is Known:
• In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes.
• Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer.
What is New:
• Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD.
• Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.
routine frailty identification and management is national policy in England, but there remains a lack of evidence on the impact of frailty on healthcare resource use. We evaluated the impact of ...frailty on the use and costs of general practice and hospital care.
retrospective longitudinal analysis using linked routine primary care records for 95,863 patients aged 65-95 years registered with 125 UK general practices between 2003 and 2014. Baseline frailty was measured using the electronic Frailty Index (eFI) and classified in four categories (non, mild, moderate, severe). Negative binomial regressions and ordinary least squares regressions with multilevel mixed effects were applied on the use and costs of general practice and hospital care.
compared with non-frail status, annual general practitioner consultation incidence rate ratios (IRRs) were 1.24 (95% CI: 1.21-1.27) for mild, 1.41 (95% CI: 1.35-1.47) for moderate, and 1.52 (95% CI: 1.42-1.62) for severe frailty. For emergency hospital admissions, the respective IRRs were 1.64 (95% CI 1.60-1.68), 2.45 (95% CI 2.37-2.53) and 3.16 (95% CI: 3.00-3.33). Compared with non-frail people the IRR for inpatient days was 7.26 (95% CI 6.61-7.97) for severe frailty. Using 2013/14 reference costs, extra annual cost to the healthcare system per person was £561.05 for mild, £1,208.60 for moderate and £2,108.20 for severe frailty. This equates to a total additional cost of £5.8 billion per year across the UK.
increasing frailty is associated with substantial increases in healthcare costs, driven by increased hospital admissions, longer inpatient stay, and increased general practice consultations.
Background:
The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor ...health than other mothers. The impact of this is rarely explored from mothers’ perspectives.
Aim:
To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health.
Design:
Qualitative semi-structured interviews were conducted and analysed using thematic analysis.
Setting/participants:
Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media.
Results:
Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect.
Conclusions:
A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.
Aim
To describe the profiles of hospital admissions of school‐age children identified with a learning disability (ICD‐11 intellectual developmental disorder) and/or safeguarding needs compared to ...children without learning disability, in a population where proactive identification of learning disabilities in children is embedded in practice.
Method
Data were collected about the reasons for and duration of hospital admissions of school‐age children living in the study catchment area between April 2017 and March 2019; the presence (or absence) of learning disability and/or safeguarding flags in the medical record was also noted. The impact of the presence of flags on the outcomes was explored using negative binomial regression modelling.
Results
Of 46 295 children in the local population, 1171 (2.53%) had a learning disability flag. The admissions of 4057 children were analysed (1956 females; age range 5–16 years, mean 10 years 6 months, SD 3 years 8 months). Of these, 221 out of 4057 (5.5%) had a learning disability, 443 out of 4057 (10.9%) had safeguarding flags, 43 out of 4057 (1.1%) had both, and 3436 out of 4057 (84.7%) had neither. There was a significantly increased incidence of hospital admissions and length of stay in children with either or both flags, compared to children with neither.
Interpretation
Children with learning disabilities and/or safeguarding needs have higher rates of hospital admissions than children without. Robust identification of learning disabilities in childhood is required to make the needs of this group visible in routinely collected data as the first step towards needs being appropriately addressed.
What this paper adds
Children with learning disabilities must be consistently identified in populations so that their needs are made visible.
Information about these needs must be collected from educational, health, and social care sources and scrutinized systematically.
Children with learning disabilities and safeguarding needs have an increased incidence of hospital admissions and length of stay.
What this paper adds
Children with learning disabilities must be consistently identified in populations so that their needs are made visible.
Information about these needs must be collected from educational, health, and social care sources and scrutinized systematically.
Children with learning disabilities and safeguarding needs have an increased incidence of hospital admissions and length of stay.
Video Podcast: https://youtu.be/Nh4j836jDFs
Plain language summary: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15903
ObjectiveTo assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital.DesignObservational cohort study ...using linked routinely collected data.SettingEngland.PatientsChildren aged 0–25 years who died between 2003 and 2017.Main outcome measuresPlace of death: hospital, hospice, home. Multivariable multinomial logistic regression models.Results39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1–10 years more likely, than those aged 28 days to <1 year to die in hospice. Children from all ethnic minority groups were significantly less likely to die in hospice, as were those in the most deprived group (RR 0.8, 95% CI 0.7 to 0.9). Those who died from 2008 were more likely than those who died earlier to die in a hospice.Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths.ConclusionsMost children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.
BackgroundThe English health inequalities strategy (1999–2010) aimed to reduce health inequalities between the most deprived local authorities and the rest of England. The multifaceted strategy ...included increased investment in healthcare, the early years, education and neighbourhood renewal. The objective of this study was to investigate whether the strategy was associated with a reduction in geographical inequalities in the infant mortality rate (IMR).MethodsWe used segmented regression analysis to measure inequalities in the IMR between the most deprived local authorities and the rest of England before, during and after the health inequalities strategy period.ResultsBefore the strategy was implemented (1983–1998), absolute inequalities in the IMR increased between the most deprived local authorities and the rest of England at a rate of 0.034 annually (95% CI 0.001 to 0.067). Once the strategy had been implemented (1999–2010), absolute inequalities decreased at a rate of −0.116 annually (95% CI −0.178 to −0.053). After the strategy period ended (2011–2017), absolute inequalities increased at a rate of 0.042 annually (95% CI −0.042 to 0.125). Relative inequalities also marginally decreased during the strategy period.ConclusionThe English health inequalities strategy period was associated with a decline in geographical inequalities in the IMR. This research adds to the evidence base suggesting that the English health inequalities strategy was at least partially effective in reducing health inequalities, and that current austerity policies may undermine these gains.
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